He was the unlikeliest of celebrities, a small boy in Houston known publicly only as David, and yet his life of confinement as the Bubble Boy made him a subject of fascination throughout the world. David spent all but the last 15 days of his 12 years in germ-free isolation, and became the oldest survivor of a rare disorder known as severe combined immunodeficiency (SCID). Even the mildest of germs in the air we breathe could have been fatal to him.
It was the second time that his parents, David Sr., now 41, a CPA, and Carol Ann, also 41, had been touched tragically by SCID. In 1970 their first son, David Joseph, was diagnosed as having SCID when he was 6 months old, and died shortly thereafter.
The decision to keep their second son in isolation from the moment of birth was a precaution against the possibility that he, too, might be a victim of the genetically transmitted SCID. The best medical intelligence did not know if David might in time spontaneously develop an immune system or if medical science might find a cure for the deficiency during the boy’s lifetime. But it was a gamble his parents decided was worth taking.
David’s staggering medical costs, both at home and during his frequent hospital stays, are estimated at more than $1.3 million. All of his medical bills were covered by federal and private research grants to the Texas Children’s Hospital in Houston.
Last October the family decided, with David’s permission, to allow doctors to try a bone-marrow transplant from his disease-free older sister, Katherine, hoping that this would trigger his immune system. It did not work.
When he died last Feb. 22, condolences poured in from across the country (many addressed: David’s Family, Houston). That he was so well loved came as a genuine surprise to his parents, who never revealed their last name or home address and who insisted on maximum privacy for David.
Now, in this exclusive two-part story, David’s mother talks for the first time about the moments she remembers most vividly from David’s remarkable birth to his brave death.
Love but don’t touch. That was the rule for the dozen years of David Phillip’s life. He spent 12 years in plastic bubbles, isolated from germs or bacteria. Isolated, too, from any human touch or kiss. But never isolated from love, and he knew that. Though his father, sister and I often felt that the thin wall of plastic was as forbidding as a steel curtain, we were always a family of four, and David was part of everything that happened at home.
We wanted David to carry on as normally as possible, to marvel at whatever part of the world he could reach but never to consider himself a curiosity. When he died, the outpouring of grief touched us profoundly. David would have been astounded if he had known that he was so loved by people who never knew him directly. For them we now want to tell his story. It seems a debt of love to do so.
I believe David was blessed in many ways—with a keen mind, a wonderful sense of humor and maturity beyond his years, which enabled him to deal intelligently with his disease. And we were blessed, too, with doctors and friends who did everything possible to see that David had the best of care throughout his life.
Most of all we were blessed by God. I always felt that God and I had an understanding about David in which God said, “If you’ll take care of this little boy, I’ll take care of everything else.” And He did. We had the best technology that medical science could devise. We had the support of a community that protected our privacy.
That David had a life at all is really because of his older brother, David Joseph, who died of severe combined immunodeficiency just 10 months before our second son was born. David Joseph was a beautiful little boy with black hair, blue eyes and chubby arms and legs. But by the time he was 5 months old his movements slowed and his coos and smiles became rare. The doctors knew he had an infection, but none of the antibiotics they tried did any good. Specialists were called in, and we heard for the first time that our son had no immune system. The only treatment was a bone-marrow transplant, which might introduce an immune system into his body.
Tests showed that the closest match to David Joseph’s bone marrow was that of his sister, Katherine, who was 2½ at the time. I remember the awful feeling I had the morning of the transplant, knowing that both my children were in operating rooms. Before there was even time to know if the transplant would work, David Joseph died of pneumonia on Nov. 21, 1970, at the age of 7 months.
We wanted to find out what went wrong, and why. Very little was known then about SCID, but the doctors did say that if the cause had been a mutant gene, the odds against its happening again were 10,000 to one. If the cause was not a mutant gene but a defective X chromosome, our chances of having another child with the same problem was one in four.
There was no known record of SCID in either my husband’s or my family, and there is no test to determine whether anyone is a carrier of SCID. The counselors seemed encouraged about the chances of our having another child free of the disease. David Sr. and I both had come from large families and we wanted one ourselves. We talked about the potential problems many times and felt the odds were on our side. Finally, on the basis of our wishes and the advice of experts, we decided to try again.
The decision to have another child came from our hearts and our minds. We were not trying to fill a void, to replace the son we had just lost. We decided to place our trust in God. No matter what happened, to us a therapeutic abortion would have been out of the question. Our choice was very simple: Have a child or not have a child. In the seventh month amniocentesis established that the child I was carrying was a boy.
David Phillip was born at 7 a.m. on Sept. 21, 1971, but not before extraordinary precautions had been taken for his birth. Several days before I went into St. Luke’s Episcopal Hospital in Houston, a small room was chosen for me and completely stripped of draperies and all unnecessary furniture. The room was scrubbed from floor to ceiling five times and kept locked until the day I arrived, to make sure it was as free of infection as possible. When we got to the hospital I had to take off my street clothes behind a screen in the hallway and put on a sterile hospital gown. Then I was rushed into the germfree room for a shower, bath and shampoo. One time through seemed thorough enough to me, but they did it twice. Once I was inside my room all outside communications, even with my nurses, were by telephone, to avoid bringing in some virus or bacteria.
For the trip to the operating room I was bundled like a mummy in sterilized sheets to avoid any contact with airborne sources of infection. When I got there, a nurse scrubbed my stomach for 10 minutes with disinfectant soap. I was to be conscious for the cesarean section and had been told not to be surprised by the strange movements of the doctors and nurses. They had rehearsed the entire process in slow motion to avoid stirring any air that might cause a germ to float near me. And because there would be no talking, I was given instructions by a slight pressure on my shoulders.
When the doctor lifted my tiny, just-born son in his double-gloved hands, I saw him for perhaps 10 seconds before he was placed in a plastic isolator bubble. He had thick black hair and eyes so dark that they were eerily piercing. As I watched, he was baptized with sterilized holy water that had been placed inside his bubble. Since the doctors knew that they could not take David in and out of his bubble at will, it was stocked with all sorts of sterilized emergency equipment in case something went wrong.
Later that day David was transferred to the Clinical Research Center at Texas Children’s Hospital adjacent to St. Luke’s. Nurses there had been practicing for two weeks with a doll in an isolator to become used to the cumbersome built-in gloves required to hold, feed and change the baby, something I would later learn to do so easily that it became second nature.
After the cesarean it was three days before I got to see David. My mother and husband and other visitors had told me that he was a beautiful baby, but the doctors were still conducting tests on him, and the bad experiences of the past had been weighing on my mind. I concealed my apprehension during that first trip in a wheelchair through a maze of corridors to greet my son.
When I got to the door of his room I was overwhelmed by the apparatus. I guess I was expecting something smaller, like the bassinet-size isolators used for premature babies. Instead there was the isolator bubble for David, and another for his supplies. Large, floppy black gloves were attached to the sides of the bubbles. Hoses were pumping in filtered air and there was the hum of the motors. I never forgot that moment, and in later years it helped me in dealing with visitors to our home who were startled at the sight of David’s equipment.
Tucked away behind the machinery, David was sleeping soundly, unaware of his spectacular birth. He was on his stomach, with his legs drawn up under him, looking healthy and very content. The sound of the motors annoyed me somewhat, but he looked so peaceful that I wondered if perhaps the hum of the motors was melodious to him. (Later, when he was at home, the noise was comforting to me, too, because it told me that all was well with him. When the motors were turned off during his visits to the hospital, I was unable to sleep soundly.)
He was dressed in a hospital-issue white undershirt and diaper. At first I couldn’t bring myself to touch him with the black, floppy gloves. They intimidated me, and I had a strange sense of foreboding. My apprehensions were even stronger the next day, when my mother and I made an unannounced trip to David’s room and found a doctor and aide measuring the bubbles. We still had not been told of any test results. We asked what was going on and we were told a more stable and permanent table was needed for David’s capsules. I immediately thought the worst, that the news had to be bad. Why else would they go to the trouble and expense of building more tables?
I didn’t tell anybody then, but that’s when I began to prepare myself emotionally for the bad news that would come several days later. David was 2 weeks old and I was at home when we received a call to meet with the doctors. On the way to the hospital my husband and I didn’t say a word. We prayed silently.
Two doctors were waiting for us when we walked into David’s room. We had spent so much time with them during the previous few months that we felt close to them and knew immediately by the pain on their faces that the news was bad. They told us that David did indeed have the same problem that had killed his older brother. If he was not continually shielded from the everyday world, he, too, would die. Then they left us alone with our son. My husband spun on his heels in helpless anger, doubled up his fist and struck the wall. My own heart was breaking as we embraced and reminded ourselves of the pledge we had made that whatever happened we would do what was necessary to secure for our baby the best life he could have.
The doctors offered the possibility that David might not have to live in the bubble for more than two years. They were hoping that his immune system was just immature and would spontaneously begin to function as he grew older.
The first two months of his life were spent in the hospital, and the fact that we got to take him home at all was a wonderful surprise. His life-support systems seemed so formidable and there were always so many people hovering over him that realistically we didn’t think he would ever leave the hospital.
When the doctors asked, “Would you like to take your son home for Thanksgiving?” I felt it was the most meaningful compliment ever extended to us. I was thrilled that the doctors felt confident that we would be able to take care of David.
There was another reason we were grateful to have him home. Thanksgiving was going to be a painful reminder of the first anniversary of David Joseph’s death, and having our new son out of the hospital and at home on that day was like a sign, perhaps even a reward, from God.
The nurses and I had daily rehearsals of how to care for David in the bubble. Those gloves made everything awkward. The day we left the hospital for the first visit home, we felt confident that everything was in order. There was no way we could have anticipated what actually happened: David got lost on the 35-mile trip from the hospital to our house!
We had arranged for a private ambulance, carrying David and one of his doctors, to follow our car through Houston’s heavy freeway traffic. The driver, obviously uneasy with his unusual cargo, turned on his siren and red lights. That parted the traffic nicely for him but our car got shuffled behind. We knew David would be in good hands with the doctor, even though neither he nor the driver had ever been to our house. They missed the freeway exit and didn’t get to the house until almost two hours after we had arrived. All that time we were wondering how much air had been provided in the tank for David’s bubble.
That was the only hitch in the first four glorious days David spent at home. It was then that I really began to feel the excitement of caring for David by myself. He slept on ultrasoft sheepskin, and I could cradle him with the gloves at feeding time and sometimes I kissed him through the plastic. If I held him long enough I could feel the warmth of his skin, and I was certain that he could feel mine. I liked to position him so he could feel my heartbeat; I had read someplace that that was important to a newborn. Often he would nap in my arms as I held him with the gloves.
It was hard having him go back to the hospital after those four days, but he was home again for two weeks at Christmas. In fact, for the rest of his life David would alternate between home and hospital, where the doctors monitored him closely. For the first nine years of his life we never left him at home in the care of others. We were always afraid that there might be a power failure or that he might injure himself. Only when he was back in the hospital did I ever enjoy an evening free of apprehension.
In his early years I was afraid to even take a shower during the day for fear something might happen, and on his first extended period at home I developed excruciating migraine headaches, which only went away when David was back in the hospital. Frankly, I learned to enjoy being relieved of the responsibility, and it was good for David to be away from me for a while, too. When he returned, we both looked forward to being together again.
Almost everything he did for the first time, David did at home. He was about 6 months old when he learned to crawl. I had left the room for a moment, and he disappeared into a supply cylinder attached to his bubble. When I came back and didn’t see him, I was frightened until I spotted him peeping out from behind a mound of supplies.
Usually he was very little trouble, but simple childhood events could cause quite a problem. A glass bottle broke when I was alone with him and I needed help cleaning up the fragments so he wouldn’t cut himself. I couldn’t hold him and pick up the glass at the same time, so I put him through a porthole into an adjacent bubble and sealed it with the bubble cap. By the time I raced back from telephoning a neighbor, David had removed the cap, crawled back into his play bubble and was headed for the glass. I got there just in time.
When he was an infant I had great trouble buttoning his clothes. The tiny sizes were almost impossible to fasten with those gloves, so I would remove an adhesive tab from one of his disposable diapers and fasten the shirt with that. Sometimes it worked and sometimes it didn’t.
In a way the restrictions under which he lived perhaps made it easier to care for him than for another, healthy child. His supplies were always right there and I always knew where he was. Of course I worried about his safety anyway. Don’t all parents worry? It was hardest on me when his older sister was outside. She needed her own freedom—to be able to play outdoors. But when she was out and I was feeding or bathing David, I would volley back and forth to watch them both, and it got pretty frustrating. I’d say a little prayer every time Katherine was Playing outside: “God, I’ll take care of David if you’ll watch over Katherine.”
David’s food first came in baby jars and later in cans. The hospital staff would remove the gummed labels, which might harbor germs. For safety, several cans would be taken at random from each carton in his food supply and checked at the hospital for any sign of contamination. Spaghetti and lasagna were his favorite foods. He didn’t care much for liver. All of his meals were eaten at his room’s temperature, which was about three degrees higher than our air-conditioned home.
We made one early attempt to warm his food by placing a heating pad underneath the bubble and then putting the food on top of it. It took several hours to get warm—and he quickly spewed it out when he tasted it. With no labels on the cans it amazed us how quickly David learned to detect which foods were going to be served simply by comparing the differences in weight. When he got older, he was allowed to choose his own foods, but he never had roast beef, bread or toast, only what came in cans, which in time he learned to open himself.
There were two foods he heard about on television that he couldn’t have: Coca-Cola and ice cream. He couldn’t have ice cream because of the high fat content and because it couldn’t be sterilized. The doctors also found they couldn’t sterilize the Coca-Cola without the heat breaking down the carbonation and ruining the taste. David had heard the word Coke so often on TV and from other children that he always yearned to try one. It was one of the first things he asked for when he was taken out of his bubble before he died. But the doctors decided he shouldn’t have one in his frail condition.
David was 5 before the hospital was able to find a vacuum-packed, canned cake that he could eat. For every birthday I would bake a cake, even though he couldn’t eat it, and the family would gather outside the bubble, with David pressing as close as he could get. Together we’d all blow out the candles.
Birthdays, in fact, were always occasions of attention in the press and on television for David. He was about 9 when he first became aware that he was a celebrity. We had kept most news about him out of his sight, concerned that it might upset him. We had asked the hospital to make only routine announcements of his progress, because we wanted him to carry on as normally as he could and not be a curiosity. But somehow he had read a newspaper article about his approaching birthday. When I told him the next day to clean up his messy room, he impishly announced, “I don’t have to clean up my room. I’m a star.” Not knowing what he meant, I said something like “I know you are, darling, you light up my life.” Still trying to milk his fame, he said, “No, I mean I’m a star: I had my picture in the paper yesterday.” I told him I had checked the newspaper today and that his picture wasn’t in it anymore, so he still had to do his chores. He laughed—and cleaned up his room.
Perhaps because it was the only way of living that he knew, David seemed more comfortable with his bubble apparatus than we did. At night we were so fearful that a power failure might occur—and cause a loss of air in his bubble—that for his first few visits home the whole family slept on a mattress on the floor beside him. When we installed an alarm that would signal a power failure, my husband and I drifted back to our bedroom, but Katherine wouldn’t budge. For every night that David was at home, Katherine, until her 13th birthday, insisted on sleeping next to his bubble.
Our first major emergency came when David was less than a year old. Late one afternoon I was at a neighbor’s home and my husband was momentarily called into the backyard when the lights in our neighborhood suddenly went out. Lightning had struck a power line nearby, and by the time we got to David the plastic isolator was already deflating. We quickly plugged the four escape valves that allowed air to leave the bubble and attached a compressed-air tank. The isolator had deflated so much that it was obvious there wouldn’t be enough air left in the tank for a three-hour supply.
We knew we had to do something. One neighbor took off in his truck to try and find a generator that would supply electricity to the house. We tried in vain to reach the doctors. Finally, the police and fire trucks answered our calls, and a generator was hooked up. We could relax. David smiled, cooed and napped through the ordeal that had lasted several hours. After that we got a generator of our own, which over the years we used many times. The fire department began routine checks on our home during any power outages. They also made David an honorary member, much to his delight.
Though I continued to become uneasy at darkening clouds or the rumble of thunder, David was never afraid. When he was about 8 a hurricane appeared to be headed for Houston, and the doctors called to say that David should be returned to the relative safety of the hospital. We told David, but he insisted he was going to stay with the family. “I’m not going,” he announced. We could, of course, have forced him, but he was already quite a little man. We felt it was important to his self-esteem to let him exercise as much control over his situation as possible. He stayed at home, and luckily the hurricane turned away.
By the time David was 3 the doctors said his intelligence was almost two years ahead of his age. When he was older we found out his IQ was 126. For all that intelligence, David did have one unique problem: He lacked depth perception. In his early years everything within his sight appeared flat. He simply couldn’t imagine a four-sided building, since he could never walk around one. He would describe a tree as a “brown rectangle and a green circle.” When he was 5, David thought nothing in the world was as big as the hospital parking lot, which he could see from his window.
The outside world became much more real the year he was introduced to his battery-powered “space suit.” This was a custom-designed outfit similar to those worn by astronauts. It was connected by an eight-foot-long air hose to motors and batteries, and the equipment was difficult to move. But the suit provided greater freedom than David had ever had, and he got to see his sister’s bedroom and roam around the neighborhood for the first time. David had to be fitted into the suit at the hospital, which took about an hour, and it was an hour’s drive from the hospital to our house. The air supply and batteries were only good for four hours, so he had only an hour at home in his space suit before heading back to the hospital. But even with those limitations, it was worth it.
When he first tried to walk in the suit, he lumbered about like a sailor trying to get his land legs. He had grown so accustomed to the cushiony feeling underfoot in his bubble that he found it difficult to walk on a hard surface. After a year he outgrew the first suit; another one was never made because of bureaucratic tangles over who would be responsible in case of an accident while he was using it.
David’s only other means of going outside was in his transport bubble, which looked like a wagon with a plastic dome. He loved going into the backyard and would talk about each trip outside for days, commenting on little things the rest of us missed. After glancing at some leaves, for instance, he said, “Mom, did you notice that they are one color on one side and another color on the other side?”
Once I remember he looked up to the sky and said, “Hello, God,” then looked down and in a deeper voice said, “Hello, David.” I knew I was raising him on the right track. My husband and I attended Catholic schools, and I thought it essential to begin David’s religious education early. I wanted him to feel blessed, to accept and appreciate his true gifts. True, he was born into a bubble. But he was alive, and the gift of life is a blessing.
David grew to have very strong feelings about God but never blamed Him. He never felt handicapped or cheated, and never said, “Why me?”
David’s schooling was as normal as it could have been under the circumstances. He didn’t go to school. School came to him. At first he only had teachers visit, but in the second grade he had a speakerphone hooked up to his classroom, two miles away. His classes lasted from about 8 a.m. until noon, and David could talk back and forth to the students and teachers from his bubble. He liked school most of the time. Like all children, though, some days he just didn’t want to go. He would hide his pencil and then tell me he had lost it so he couldn’t go to class. But I knew all the hiding places in the bubble, and the lost pencils were soon retrieved.
I made sure he prepared for school just like the other kids. Each morning I would make him clean up with a sponge bath using sterile water. We could not use soap. I made him put on fresh clothes, comb his long dark hair and pay attention to his classwork. I told his teacher that I would not come into the room when she visited unless she called me. I assured her that when David was at school, she was in charge.
Often his teachers and classmates would come to our house for additional work after school. It helped David to see in person the people he heard over the speakerphone. Since he tended to get upset if he made a mistake in his work, it showed him that other students also made mistakes. Several times the class scheduled special entertainment programs at our home, and David would join in, using hand puppets, speaking lines he had memorized or playing music on his recorder. He even participated in spelling bees.
On his own David kept active moving around his bubble. He would occupy his day reading, listening to music or drawing. He always seemed to get along better with older children. With children his own age he would tend to play video games and that sort of thing. He usually won, and it bored him after a while. Also, most children his own age tended to defer to him. Older children, like his sister, weren’t so easily intimidated. Once in a while I would have to rush into the room to break up a loud pushing or wrestling match as they were slamming one another around with the gloves, much to David’s delight.
In the last two years of his life he only went to the hospital two or three times, usually for a two-week stay. There was one time when he didn’t want to go back to the hospital for a scheduled visit, and it broke my heart. He was about 5 then, and said flatly, “I’m not going back. I want to stay here.” I called the doctor and told him I didn’t want to force him to go back if he didn’t want to go. The doctor said that we couldn’t let a little boy tell us what to do. The doctor was right. David was a child, we were the adults in charge and I would have to assert control. He went back.
When David was small, doctors had expressed some concern that he might want to get out of his bubble environment before a treatment had been discovered. But I knew him and knew that he wouldn’t “break out,” as they had feared. Still, there had to be some limit to how long he could live in isolation, no matter how hard we tried to widen his world. We had no idea how soon that time would come.